Mum diagnosed

After being admitted into hospital on 26 November 23 and after 2 failed bile duct stents, I was informed I had bile duct cancer. I requested literature from AMMF, a charity specialising in bile duct cancer. I found the literature very informative. I pushed for surgery as it offered the only chance of a 'cure'. I had the operation 29 April 24. I'm recovering very slowly and awaiting histology report which I hope will give good news. I will then need a course of chemo as insurance. 

That's the bare bones of it. More detail:-

I was in and out of hospital over a 6 month period, even spending Christmas Day there. I was tired all the time and felt really unwell. The surgery took 14 hours and involved rermoving my bile duct, gall bladder and 40% of my liver. The recovery is slow, although my pain is well controlled with painkillers and nowhere near as bad as the stomach aches I used to get prior to going into hospital. I am now 7 weeks into recovery, rest is vital. I don't know what the future holds but I'm a positive person and hoping for the best.

My advice would be read up on bile duct cancer, be advised by the doctors, at the same time as knowing what you want.

Would I have the surgery again? YES, for me it offered the best chance. I don't know what the histology reports will be, but I'm hopeful. I feel a little better each day, although im told full recovery can take 6 months to a year. The support from my family and friends has been humbling. 

I hope this helps and wish you well

Waygoose, a 69 year old healthy male (Aquafit 4 times a week, gym once a week prior to my diagnosis). 

Hi Wayzgoose, thank you so much for your reply. It sounds as though surgery was the best option for you, and I’m glad to hear you’re feeling better each day. Wow! 14 hours! It’s incredible what the surgeons can do and it’s great to hear that you would have surgery again, even though the recovery has been slow. It gives me hope that perhaps Mum can get through it, we just have to take each day as comes. We’re with her every step of the way and she is determined  

I wish you all the very best with your recovery and sending love and positivity for the histology report too 

The speed at which this condition hits you is unreal! Very positive news that it does not appear to have spread. My mums was discovered after a trip to A&E because of jaundice but unfortunately it had metastasised to other organs and lining of peritoneum. It took three attempts to insert stent as tumour in bile duct was very ‘tight’ by that stage she was too weak for chemo. She was 78. Wishing your mum a full recovery xx 

Hi VCV, thank you for reaching out. I’m so sorry to hear about your Mum, this thing seems to come from nowhere and we’re just never prepared to be without our Mums are we? Thank you so much for the positive wishes too, I’m cautiously hopeful, but so aware that there is a long road ahead of us all, and that it could all change very quickly.

Sending love and light to you and your family ️

So today we have had an update. Unfortunately the doctors have decided that for my mum, surgery is not an option. They are concerned that it has spread to a lymph node so wouldn’t do it, plus the surgery is quite gruelling. So, she’s got to have another biopsy, then potentially remove the stent she has, and then internalise her liver drains. She will also be referred to oncology so that she can learn about what her treatment will entail. The doctors have said that the cells they got from the brush biopsy were dysplasia cells? And they think the cancer is indolent? I’m getting used to new terms so any advice would be great! 

I am obviously devastated because prognosis is less favourable without surgery. The doctors said roughly 2 years… However, mum feels well at the moment, is strong and determined and just wants to come home so that she can live life. I think she’s quite pleased that she won’t have to go through surgery and spend precious time recovering. We’re with her every step of the way, but it’s so hard to get my head around the fact that she was ‘healthy’, doing yoga, walking miles and had a clean bill of health from a health check up only a few weeks ago. It doesn’t seem fair, but we’re going to take it day by day, and enjoy being together when she’s home from hospital. 

Hi I was diagnosed with bile duct cancer 8 weeks ago got taken into hospital with a suspected gallstone they found a mass in my bile duct which has spread to my liver and peritoneal I did not want to know my prognosis as I am defying all the odds literally not got one symptom I am fit and healthy just come back from Turkey on a family holiday started my first round of immunotherapy and chemo today I have heard lots of positive stories about this combined treatment xx

Thanks for the update. Life can change in an instant. I think it's important to make the choice that's right for your mum, based on advice from the doctors. Coming home after a stay in hospital is the best feeling. 

I wish you all well as you continue on your journey. 

Wayzgoose 

Hi Eviesnanny,

Thank you so much for your reply. I am sorry to hear of your diagnosis but also heartened to hear that you are defying the odds and living life to the fullest! Mum also doesn’t have symptoms, so we’re keen to get her home after the next few procedures so she can do the same 

On a side note, she is also nanny to an Evie (my daughter).

Wishing you all the very best, I hope you keep defying those odds

It is literally like living through mental torture the day I got my diagnosis I felt like the rug had been pulled from beneath me then watching your family literally start grieving for you and there is absolutely nothing you can do to make it better I went through hell for 2 weeks to find out if they could give me any treatment I have a metal stent put in my bile duct then a biopsy done then had a meeting with the oncologist and he suggested combined immunotherapy and chemotherapy I had the most horrendous day yesterday cried all day but I think it all became very real plus we told my three little grandaughters and my little Evie who is my best friend at 13 it’s hit her hard but I think the fact that I appear so fit and healthy has assured her I’m hopefully not going anywhere soon apart from that initial 2 week wait I cannot fault my team and the pace they have gone they done everything to get all procedures done before my family holiday so that I could start the treatment on my return I hope your mum gets all the necessary things in place and can hopefully start treatment I have heard so many positive stories about combined immunotherapy and chemotherapy I am 57 so I am hoping it will stop the spread and I continue feeling like this x

It must have been a huge shock to learn about the diagnosis of your Mum.

I hope that she will continue to stay strong, and positive.

It does feel like a roller coaster, from the time of diagnoses, CT scan and ultrasound pet scan, appointments. The list goes on.

I have now had cancer 3 times in my life, Breast cancer,  2002 Kidney cancer, 2021  and now Bile duct cancer.

I found out the latest in a phone call after my follow up Ct scan for my Kidney, I had the scan in August 2023, my Kidney cancer nurse phoned me in October that year to say that I had something on my liver. 

I have been told that surgery is not an option, I have had 3 different kinds of chemotherapy, the 1st 2 didn't work, so I am on my 3rd try and coming to the end of this cycle, have another CT scan booked for the 30th of July. Quite scary as I don't know the outcome of this treatment.

The hardest part was telling my children and Grandchildren, but I am going to live the rest of my life to the fullest, enjoying the time with my family and friends. 

I wish you and your Mum and of course all of your family the very best, in her journey through this uncertain times. We absolutely have to have a positive mind set to get through it.